All about Guillain-Barré Syndrome - News & Happenings on the GBS scene 2002

December 2002: Lauri Lowen writes: "It seems that I only get illnesses which nobody has heard of and are difficult to pronounce!"

13-year old Alex recovered successfully from suspected MFS. His parents feel certain chiropractic treatments were beneficial - see "Case histories".

November 2002: Kezzi has had CIDP/AMSAN for a number of years, and has generously agreed to share his case history. Read his information-packed case history!
See "Case histories".
GBS Foundation International's biannual symposium is being held in California 22-23 Nov. 2002.

October 2002: Stephanie has problems with double vision and facial sagging - read her email under 'Readers Comments'.

David Cleal has very kindly decided to share his encounter with Miller Fisher syndrome. MFS is a rare sub-type of GBS, which is a rare syndrome in itself. Written by his wife, it details the frustrations and joys patients experience.
See "Case histories".

The first national GBS rally I organised earlier this year was a success. Read the report and see the pictures!

September 2002: Sue and her newly-diagnosed husband require support - see Sue's email under 'Readers Comments'.

June 2000: Jimmy Logan, the cutest little boy on the east coast... the story of a child with GBS. See Case histories.

May 2002: Konrad Tiburzy is a German gentleman, whose condition appears to be deteriorating slowly, despite continuous treatment with Ig. He is very interested in corresponding with persons who know something about on-going research into GBS/CIDP... Check out Case histories and Readers' Comments.

April 2002:
Asger Lauridsen of Denmark is convinced his brother died of GBS in 1945. Read his memories of what happened then under 'Case histories'. Milt Steele, WA USA, has had GBS/CIDP since 1992. He believes that heavy metal poisoning may have played a role in his contracting the syndrome. Milt is a long-time user of plasmapheresis/IVIg (1993-2002) and his story is a great example of CIDP Management by the patient!

Liverpool defender Marcus Babbel is determined to return next season... [more], giving up his earlier wish to play this season ...[more]. He has come a long way since beginning treatment ... see 18.03.2002. Thank you for the links, Ken!

The GBS Denmark chatroom is finally here! Ex-patients, patients, family members, health professionals - everybody with an interest in GBS/CIDP is welcome.
There will be a weekly chat every wednesday at 21.00-22.00 Danish time (GMT+1 summer, GMT+2 winter) on subjects such as medication, treatment etc. Check 'Chat' in the Danish section of the website to log on.
'Other languages' is finally ready for those who are more comfortable in languages other than Danish & English. Check out the new links, on everything from Kierkegaard to MMN!

March 2002: One of the new features in the website, the page for Health Professionals, is now up and running! It will contain information and links chosen specifically for health professionals dealing with GBS patients. If you have content or links you would like to share with colleagues all over the world, please do email!
Konrad Tiburzy from Germany has written in about a new (?) treatment for GBS - read his email on the Readers' Comments page, where more details are available.

Due to a family emergency, Peters GBS-diary has been interrupted. It will be resumed shortly, and meanwhile, you can receive it directly from Peter. Just send him an email, check the diary for this.

As you may already have noticed, the website is undergoing a makeover designed to improve its appearance, to introduce new features and to improve navigation. I apologise for any inconvenience caused - if you find dead links or errors, please report them so they can be rectified. Check out the Danish section for a sneak preview!
I am designing a new batch of brochures for distribution to hospitals and physicians in Denmark. The purpose of the brochure is to increase awareness of the syndrome, both among health professionals and patients. Does anyone have any good suggestions as to content or recipients that I could incorporate? Suggestions are welcome...

The GBS support group of the UK are holding their annual conference on 20 April 2002. Interested? Sign up and send in the fee by 01 April 2002.
Milt Steele, WA USA, has had GBS/CIDP since 1992. He believes that heavy metal poisoning may have played a role in his contracting the syndrome. Milt is a long-time user of plasmapheresis/IVIg (1993-2002) and his story is a great example of CIDP Management by the patient!
And now for some good news: Markus Babbel, German Liverpool player, has begun training again. He is looking forward to playing again.... Sorry, I can't seem to find this information in english. This link has been brought to you courtesy of Kris, who is under recovery. He trains his sons football team, and he reports that he (and the kids) trained outdoors for the first time this year, for 90 punishing minutes! Well done, Kris!!

February 2002: Peter von der Fehr and his partner Lisbeth love the response to their GBS-diary, in the form of emails from all over the world. Thank you for writing in or calling during the crises Peter experienced. Is anybody else interested in a similar project? Please contact me.

Anna Matthews from New Zealand has sent in her case history. She has CIDP, not GBS, so her story doesn't really belong here, but many CIDP patients start off being diagnosed as GBS patients, and knowing that she has put a great deal of effort into writing it, I have decided to publish it. Anna found out that she was pregnant a few days after receiving the diagnosis of GBS. Thank you, Anna!

Steve Kramer is an american doctor who suffered a relapse while recovering from GBS. Read his story, in which he talks about his fears and depressions.

Ex-patients and family/friends of GBS-patients willing to share their experiences with patients and their families - please contact me for further information on the activities of the support group!

January 2002: Liverpool defender Markus Babbel is the latest in the string of well-known personalities who have contracted GBS. In his case, the syndome developed after flu-like symptoms. His treatment is described ("Babbel out with new virus").
Babbel is now on the list of celebrities who've had GBS. Others are Celtics football player Morten Wieghorst and deceased best-selling author Joseph Heller. Deceased South African cricketer Tertius Bosch is also on the list. His mysterious death led to rumours of a wife who was a serial adultress, a hidden will, exhumation, and accusations of poisoning.. [more].

Peter von der Fehr has just been diagnosed as having GBS. He sends a desperate appeal to all those who have recovered from GBS: "Why does nobody ever write that it ended well??" See 'Readers' Comments'. He shares his story in the hope of getting a response from others suffering from GBS, and also the journal he and his girlfriend keep over the course of the syndrome, see 'Case Histories'. Keep checking back for the daily update!

"Merete" reports that her husband has finally been diagnosed as suffering from a peripheral neuropathy (PN) after two years of intense suffering, during which he received very little medication for pain and no diagnosis. Her story appears in the Danish section.

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Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk